PROGRAMMING FOR CHILDREN AND TEENS WITH AUTISM SPECTRUM DISORDER www.alastore.ala.org ALA Editions purchases fund advocacy, awareness, and accreditation programs for library professionals worldwide. An imprint of the American Library Association CHICAGO 2014 www.alastore.ala.org PROGRAMMING FOR CHILDREN AND TEENS WITH AUTISM SPECTRUM DISORDER ALA Editions purchases fund advocacy, awareness, and accreditation programs for library professionals worldwide. BARBARA KLIPPER An imprint of the American Library Association CHICAGO 2014 www.alastore.ala.org BARBARA KLIPPER has been involved with people with autism since 1986, when the first of her two sons to have this disorder was diagnosed. She and her husband were founding parents of Giant Steps, a school for children with autism in Fairfield, Connecticut. In 2002 she was asked to develop the Special Needs Center collection for The Ferguson Library in Stamford, Connecticut, and since then she has been able to combine her interests in librarianship and service to children with disabilities. Barbara developed The Ferguson Library’s grant-funded sensory storytime program, and she has presented at conferences and trained librarians from around the country in autism awareness and sensory storytime programming. An active member of the American Library Association, Barbara has chaired the Library Services for Special Population Children and Their Caregivers Committee and served on the Schneider Family Book Award jury and the ALA Accessibility Assembly. © 2014 by the American Library Association Printed in the United States of America 18 17 16 15 14 5 4 3 2 1 Extensive effort has gone into ensuring the reliability of the information in this book; however, the publisher makes no warranty, express or implied, with respect to the material contained herein. ISBN: 978-0-8389-1206-5 (paper). Library of Congress Cataloging-in-Publication Data Klipper, Barbara. Programming for children and teens with autism spectrum disorder / Barbara Klipper. pages cm Includes bibliographical references and index. ISBN 978-0-8389-1206-5 (alk. paper) 1. Libraries and children with disabilities. 2. Autism spectrum disorders in children. 3. Libraries and teenagers with disabilities. 4. Libraries and the developmentally disabled. 5. Children with autism spectrum disorders—Services for. 6. Youth with autism spectrum disorders—Services for. I. Title. Z711.92.H3K58 2014 027.6'63—dc23 2013044207 Book design by Kim Thornton in Quicksand and Charis SIL. Cover image © Greenyo/Shutterstock, Inc. This paper meets the requirements of ANSI/NISO Z39.48–1992 (Permanence of Paper). www.alastore.ala.org For my wonderful family: my husband, David Daniel, and my two adult sons, Michael and Matt. And for everyone who lives with and loves a person with ASD. www.alastore.ala.org contents Foreword ix Acknowledgments xi Introduction xiii CHAPTER 1 What Is Autism? 1 CHAPTER 2 Decisions and Best Practices 7 CHAPTER 3 Preparing Storytime Programs 23 CHAPTER 4 Storytime Program Models 35 CHAPTER 5 Programming for School-age Children 57 CHAPTER 6 Programming for Teens 85 CHAPTER 7 Programming for Families 103 CHAPTER 8 Programming in School Libraries 111 Appendix A: Resources 127 Appendix B: Books and Related Sensory Activities 133 Appendix C: Rhymes and Related Sensory Activities 137 Appendix D: Keys to a Successful Library Visit 141 Index 143 vii www.alastore.ala.org foreword IVE YEARS AGO, DAN WEISS AND I SEARCHED HIGH AND low in library literature for information to start our library customer service project for individuals on the spectrum here in New Jersey. We were shocked to find virtually nothing dealing with patrons with autism spectrum disorder. Many hard-working librarians were creating inspirational projects for individuals with other disabilities, and certainly many people involved with ASCLA were champions of making our Flibraries more inclusive and welcoming. Yet the area of cognitive disabilities seemed to be absent. We worked with local health agencies and our regional library cooperative to start our Libraries and Autism: We’re Connected program and website, and we immediately saw the need to disseminate our new knowl- edge to other library staff. Since then, we have brought our training to many sites throughout the United States, always finding people eager to better serve these individuals. I am so enthusiastic about Barbara’s book. She has assembled an excellent compilation of the many exciting and replicable programs happening through- out the United States and Canada. Some of these ideas are more ambitious than others, but they all have the same goals—bringing families and individuals with autism spectrum disorder (ASD) into our library buildings and better educating staff and patrons alike about the growing numbers of people diagnosed with ASD. Important things are happening everywhere, and we all need to get on board. Be very clear—you do have many families with ASD in your own community; and with a very little effort, they may well become your most loyal and ardent ix www.alastore.ala.org foreword x supporters as we have found to be the case here. This book holds everything you need to understand about why library programming and services need to be available in every library. Better yet, you will learn how to get started in a nonthreatening and instructive way. Be brave and sample Barbara’s many ideas. I guarantee you will become inspired to become an advocate to make your own library inclusive and proac- tive for all customers and especially those with autism spectrum disorder. —Meg Kolaya Kolaya is director of the Scotch Plains Public Library in Scotch Plains, New Jersey. With Dan Weiss, director of the Fanwood Memorial Library in Fanwood, New Jersey, Kolaya developed the Libraries and Autism: We’re Connected program and website, www.librariesandautism.org. www.alastore.ala.org acknowledgments HIS BOOK WOULD NOT HAVE BEEN POSSIBLE WITHOUT the expertise of the many librarians and ASD profession- als who so generously shared their time, their knowledge, and their ideas with me. They include: Dr. Mark Greenstein, who many years ago introduced me to the idea of comparing autism to plaid, and who gen- erously shared his thoughts with me for this book. Speech pathologist Beverly Montgomery, who copre- Tsented with me at a New England Library Association Conference in 2009. Ms. Montgomery gave the clearest explanation I’d ever heard about the relationship between the features of ASD, text comprehension, and reading preferences. In an interview in 2012, she also generously shared programs that she’d done with students through the years, so that I could offer them to librarians in this volume. Music therapist Dori Berger, who worked with my son Matt for many years, and who shared with me her very helpful thoughts about how to select music for children with ASD. Art therapists and educators Michelle López and Jennifer Candiano, whose work with the Queens Library and with children and teens with ASD at the Queens Museum of Art is a model of successful programming and collaboration. Thank you to librarians everywhere who provide programming for children, teens, and families with ASD, especially the many who so graciously shared their stories and their programs with me for this book. Thanks also to friends and professional colleagues who read drafts of this book and offered suggestions and comments: xi www.alastore.ala.org acknowledgments xii Speech language pathologist Vonnie Neufield, a good friend, who lent her ear and her expertise, and who shared part of this book with the librarians at the Danbury, Connecticut, school where she works. Carrie Banks, director of the Child’s Place for Children with Special Needs at Brooklyn Public Library, a mentor and friend, who gave me ongoing support and encouragement. Heather Dieffenbach, whose presentation, “Programming for the Spectrum: Developing Inclusive Children’s Programs for Children on the Autism Spectrum,” developed when she worked at the Lexington, Kentucky, library, influenced me as I developed The Ferguson Library’s sensory storytime program. Gail Karlitz, a friend who read numerous drafts with a trained eye, and whose comments and expertise made this a much better book than it would have been without her input. Thanks also to Caroline Ward, youth services coordinator at The Ferguson Library, who introduced me to involvment in ALA, and who offered me, a part- timer, the rare opportunity to introduce new ideas and develop programs like Sensory Storytime. Special thanks go to my husband, who not only read and commented on a number of different versions of this book, but who cheered me on throughout the process of bringing this project to life. And this wouldn’t be complete without an expression of gratitude for my wonderful editor at ALA Editions, Stephanie Zvirin, who approached me at a conference and asked if I had ever considered writing a book on this topic. She not only planted the seed, she watered it and harvested the fruit. www.alastore.ala.org introduction N APRIL 2013, THE CENTERS FOR DISEASE CONTROL RELEASED ITS latest statistics on the incidence of autism. Data collected from 2011–12 indicated that about one in every fifty children in the United States had an autism spectrum disorder, or ASD. Just a decade earlier, the inci- dence was one in 150.1 What was relatively rare a generation ago has become epidemic. There has been a lot of conjecture in scientific literature as well as popular media about the reasons for this increase, and it is probably Idue to a complex combination of better diagnostic tools, overdiagnosis, and an actual increase in affected children. Whatever the cause, this statistic is frighten- ing, and it has implications for us as individuals and for our public institutions, including our schools and public libraries. It is difficult to comprehend the impact of a statistic—to translate a number into a picture of real people.